Full Onset Of Cholinergic Urticaria in 3 Months After Visiting A Hot Climate

January 30, 2018 by Forum Member

Hi All – Sharing my story if it will help others. The last time my life was normal, I was in Arizona, walking around in 90 degree heat, climbing some peaks, and enjoying a spa. That was early October, and within weeks after coming home, I started to experience what later would be diagnosed as cholinergic urticaria. I played tennis competitively twice per week, before all this began.

I went from having a “prickly” patch on just my lower back with no visual symptoms, to now having painful hive-like welts all over my body whenever it heats up. All in just 3 months.

If I’m lucky I can go a day without breaking out; however, if I walk fast my feet can break out (with even light socks on shoes). If I wear a long sleeve shirt in a hotter room my arms will break out. If I do any activity (vacuuming) my entire body will break out. It takes 1-2 minutes to start, and if I ice myself it can take 1-2 minutes to go away. It’s that fast to come on, and that fast to go away.

Doctors seen: Primary care (prescribed steroids), Neurologist (did sweat testing, also did biopsies and checked for Neuropathy – both were negative), Dermatologist (biopsied me when I broke out), and Allergist (doctor that is running point on all this).

Sleeping: I have to sleep with practically no clothes on, on top of the sheets, in a colder room.

Eating: I am ~6 weeks into the elimination diet mentioned in the book. Rarely, I will eat something outside of the strict elimination diet.

Heat avoidance: Short sleeve shirts everywhere, no exercise, no basic household tasks (vacuuming). I carry an Epi-pen in the event I break out and can’t control it.

Injections: I am getting shots of Xolair (https://www.xolair.com/) – 300 mg monthly. They are likely going to up my dosage to bi-weekly. I’ve had 3 shots so far, and my 4th shot will be in a few weeks. This is supposed to help people with cholinergic urticaria.

Net net, things are very bad for me, and I even got to a world known cholinergic urticaria doctor at Johns Hopkins, and he recommended to my allergist that I try Ketotifen.

I ordered it from Canada. It is supposed to help severe CU patients. One month cost me ~$180 with expedited shipping. Normally it is around $150/month at the higher dosage I’ve been prescribed. It is not FDA approved, but widely distributed in Canada and Europe. In the US they use it for Eye drops. I hope to receive it in the next week or so.

As you can tell from the above, I’m on 3 different antihistamines (Xyzal, Zyrtec, and Singular/Montelukast) and that has not knocked this back to a better quality of life for me.

I hope to share some good news after the Ketotifen and/or increased Xolair shots kicks in.

I hope all of you find the solve for this as it is a terrible way to live.

Josh

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Comments

Hi try ( LDN) ( low dose naltrexone) it worked for me, I take 4.5 ml at night,it seems to reprogram my body system,anyway when I had the curse ( Urticaria) I said I would try anything to get rid,and thank God it worked for me,and no side effects at all, consult your doc and check it out on the web , it helps a lot of other conditions as well! I now can sweat easily without the dreaded itch,and once we sweat we’re back to normal again,, Good luck to all the sufferers I know what your going through!

One year ago my very active son started getting CU symptoms upon exercise, then it became stress then hot water, heat etc. It gradually got worse throughout summer. He was taking 90mg zertec, 720mg Allegra and 300mg Zantac a day. Every time he started new antihistamines it helped for a lcouple of days , then stopped working. By end of summer it was unbearable he had several episodes a day last at a level 10 for 10-20 min each. He didn’t even want to start school. They first tried him on doxepin, it seemed to help. But got too tired. My son tried everything you mentioned above excluding singular(it seems to make it worse).

He is currently on 2700mg of gabapentin and 90 mg of cymbaltra. He has had 300mg of Zolair shot once a month for three months. Two months ago he started getting 50% relief. He then tried going off cymbaltra and after two weeks starting having great itching/pinspricks.

Zolair can take between 4-6 months before fully knowing it’s effectiveness. This works for almost all CU cases.

My son just tried going off cymbaltra and after 2 weeks is experiencing bad pain. He is going to resume cymbaltra. Just got back from dermatologist. He thinks 1. Flushing 2. Neuropathic pain starts when heat opens up vascular pores/skin. Might have erythromelagia or flushing. Therefore cymbaltra helping.

He will still go on Zolair to see if he has CU without the hives. We will wait for full 6 months.

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